Patient Leader

Staying Alive with Scleroderma is the Facebook Page that Amy Gietzen established about 7 years ago. Amy has used Social media to share her personal, heartfelt story of her battle with a Rare Chronic Terminal Auto Immune disease to inspire, educate and Support others living with the same illness. Amy's unique, quirky, and hilarious tales of her day to day life have really captured the hearts of all of her Facebook followers. The past year she has made strides to advocate more aggressively by having articles published in "The Mighty" and on the Scleroderma Foundation website and "Inspire". Amy shows her follows that they are not alone and being sick doesn't define who you are!


West Seneca, NY


Advocating For Another Best in Show: Facebook Lifetime Achievement Best in Show: Twitter

I would like to nominate Amy Gietzen for her Facebook page, Staying Alive With Scleroderma. She has over the last 7 years taken her illness and transformed it into a site for communication and education among her friends and others all around the world. Her daily posts talk about her life struggles with Scleroderma to bring awareness to others.  — Christine

She is so generous with her time to help so many people with a rare disease, scleroderma. Ahe is informative and calming. Supportive and understanding. She makes us feel like we can do anything regardless of our limitations and that we are not alone. Ahe raises money for the disease, and diacusses awaremess to a hidden disease.  — Amanda

Amy is a fighter. She doesnt give up. She takes what life has given her and teaches others how to adapt with an open mind and beat the emotions you will be overwhelmed with day to day. She educates, gives tops and advice, and is caring and compassionate. She is devoted to helping others with Scleroderma. Amy also is active in the community helping.  — Amanda

She goes above and beyond to help those in our small sclerod4mq family while spreading awareness to others.  — Tracy

Amy is a wonderful woman living with a disease that is killing her. She is always smiling - as much as her tightening skin allows her - and filled with joy of life. Her dreams of a nursing career, marriage and children have been destroyed by this disease, but she has found a new career with her FB site, supporting and educating others. E.DohertyMD  — E


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